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Jenny versus Jennifer

How would you describe an actress and a mother who makes public statements about the nation’s vaccination programme?

Brainwashed simpleton?

That is a bit strong, even when applied to Jenny McCarthy. But this is the EOHarm email list passing judgement on a different actress, Jennifer Garner whose crime was to speak up in favour of vaccines, namely the flu vccination programme in the United States. Another letter described her as,

Just another Hollywood uninformed propagandist?

This without a hint of irony from members of a group that has nothing but praise for their own Hollywood uninformed propagandist, the aforementioned Jenny MCarthy! Another letter suggests that Jenny McCarthy might want to pop round to Jennifer Garner’s house for coffee and presumably put her right on the vaccine issue at the same time.

I feel she would get short shrift. Jennifer Garner will have been ably briefed by the American Lung Association. She knows that with an annual death toll of 36,000 from influenza and its complications, this is the number eight killer in the USA with 2.7% of all deaths. It used to be 4% which suggests that the vaccine is having a positive impact. EOHarm takes its inspiration from “Evidence of Harm,” a book that purports to be a balanced investigation of the alleged connection between the mercury content in childhood vaccines and the growth in the prevalence of autism, but ends up providing uncritical support for the belief that we are in the midst of an autism epidemic caused by mercury poisoning.

Original Biomedical Theory

Once upon a time biomedical explanations and interventions for autism revolved around diets, anti fungals and vitamin supplements. I have a book, “Biological treatments for autism and PDD” by William Shaw dated 1997 which even contains a recommendation for parents to vaccinate their children against Streptococcus Pneumoniae.

The closest it comes to implicating vaccines is the author’s belief that adverse reactions to vaccines may be one of the factors contributing to recurrent infections that require antibiotics. It is the antibiotics that are supposed to do the real damage, destroying the natural flora in the gut. Consequently fungal infections damage the gut and allow poorly digested peptides to enter the blood stream. If these get into the brain they attach to opioid receptors and cause the symptoms we diagnose as autism. Three years later Karen Seroussi wrote “Unraveling the Mystery of Autism and Pervasive Developmental Disorder” [Simon and Schuster 2000] which repeated Shaw’s basic hypothesis. Vaccines, typically MMR but also DPT, were again accorded a supporting role in exacerbating a pre-existing difficulty coping with infections. Mercury, heavy metal poisoning and chelation therapy did not get a mention.

Mercury Rises

There was a problem with this “Opioid Excess” theory of causation. [apart from the obvious one that even today it remains a tentative theory with little hard science to support it.] It had originally been expounded in 1979 [Panksepp J. A Neurochemical Theory of Autism] Even if the MMR was an added factor, it too had been around since the 1970s. But the dramatic increase in reported cases of autism in children suggested that something else was happening. There were perfectly good reasons not to believe in an epidemic. But for those parents already primed to blame MMR, the growth in autism led them to look for vaccine-related causes. During the 1990s the number of mandatory vaccines for children in the USA grew steadily alongside the autism figures. In some cases children could have received in excess of the stringent safety limits for mercury exposure if they had receieved all their vaccine shots. A paper pointing to supposed similarities between mercury poisoning and autism was published in a fringe journal. Information supporting the mercury hypothesis was widely disseminated amongst parents via the internet. David Kirby wrote his book, “Evidence of Harm” and the rest, as it were, is history.

Blame all Vaccines

Now that mercury has been removed from all mandatory childhood vaccines and autism shows no signs of decreasing you would think that people would move on and look for other explanantions for autism prevalence. Perhaps this article in Time Magazine or this interview with Dr Gernsbacher and Dr Neuschaffer could offer a less catastrophic interpretation of the figures.

But parents who have invested so much intellectual and emotional capital into their belief in vaccine damaged kids as a source of autism are increasingly blaming the vaccines themselves. The real vaccine/autism scare began with the MMR fiasco in the UK. That resonated in the USA where Dr Andrew Wakefield is a popular figure at Defeat Autism Now events. As I understand it, in one variation on a theme, the mercury in vaccines was supposed to weaken the immune system and the measles component of the MMR subsequently overwhelmed it. IF you believe this and IF you also buy into the conspiracy theory that the US government [in the form of the FDA and the CDC] and the big drug companies knew about this and are now engaged in a cover-up, it is a short step to believing that all vaccines are dangerous and everything that the government tells us about vaccine safety and efficacy is a lie.

For the true believers 36,000 preventable deaths from influenza [and that is in the USA alone, never mind the rest of the world] are as nothing compared to the hypothetical possibility that vaccines cause autism. Brainwashed Simpletons? No, more like sadly deluded.

Thank you Jenny McCarthy. Since I wrote about you my readership has doubled. That is still not enough to offset the harm that will ensue if even a tiny fraction of your TV audience swallow your message that the MMR vaccine caused your son’s autism. But here is a chance for you to make amends. Have you heard of the theory that circumcision causes autism? I only ask because in an earlier book you describe how you had your son circumcised.

“If you don’t know what an uncircumcised penis looks like, you will once you baby boy is born. When I saw my son’s for the first time, I thought it looked kind of like a wrinkled french fry. I had the hardest time knowing that I would have to be the one to tell the doc, “Go ahead.” How could I do anything to cause him pain? But I did, and my main reason was that I wanted him to have a pretty penis.”

Way to go, Jenny! Cosmetic surgery on your infant son’s penis. The evidence for this causing autism is every bit as strong as the evidence for vaccines. So, if you could just mention this on your next TV appearance, it may not save any children from autism, but it may persuade some parents to spare their child from painful and unnecessary surgery.

Kev has just blogged about an interesting discussion on ABMD, an email list devoted to biomedical interventions for autism. The bare bones are that a parent asked some obvious questions about how many recovered kids there were and where was the research that followed them up. From the subsequent replies three points struck me.

1. The Biomedical Approach is not a cohesive whole

Within the biomedical movement there are different strands of opinion. I remember discussions ten years ago about biomedical interventions in which vaccines were barely mentioned, if at all. The received wisdom then was that autistic kids were more prone to infections than their NT peers. Ear infections seemed a common culprit based on parental anecdotes and strep was in there too. (NB Both these infections regularly afflict non-autistic kids as well.) Antibiotics were prescribed that got rid of the infections but also disrupted the beneficial bacteria in the children’s guts. This led to yeast infections which led to leaky gut syndrome and allowed partially digested proteins to pass through the gut into the blood stream.

Some of these proteins would cross the blood brain barrier in sufficient quantities to bind with receptors in the brain and create a condition analogous with opium addiction. When your child was happy, flapping and rocking, he was actually high on the effects of these proteins that had a narcotic effect on his brain. And when he was tantrumming, self injuring and screaming he was suffering the withdrawal symptoms because he needed another fix of the foods that fed his addiction.

The ‘cure’ was simple enough. Exclude the guilty proteins with a gluten and casein free diet. Heal the gut with antifungal drugs and use vitamin supplements to restore a healthy balance. The science behind this theory has never been adequately tested. It could be that some autistic people do have a natural tendency to react badly to certain foods. Avoiding these foods will avoid the bad reactions. Will it avoid the autism? That depends on whether the dietary problems cause the autism or the autism causes the dietary probems. Or it may just be an unrelated coincidence.

Even if it turns out to be nonsense this is fairly benign nonsense. Plenty of people with food intolerances survive on a diet that excludes dairy, wheat and similar grain products. So can autistic people. But somewhere along the line vaccine damage and heavy metal poisoning got factored in and remedies like mega doses of vitamins, chelation, lupron injections and other powerful biochemical interruptions to the systems of autistic children were introduced. I take comfort from the fact that parents and physicians who favour the old dietary and nutritional interventions are not all convinced by the science or the ethics of the newer, more radical interventions.

2. Recovery Does Not Mean Cure

Some of the parents reported how their child had ‘recovered’ from autism and continued to improve on biomedical interventions. Others reported on ‘recovered’ children who were still autistic! Recovered seems to mean being mainstreamed for many parents. If the kid can manage in a regular classroom they are deemed to be ‘cured’ or ‘recovered’ or ‘rescued’ or whateve the word of the day that is used to describe inclusion.

Essentially these parents are saying that, “Bad things happen to kids who stand out, who are different. The fault is with the child. If I can make my child indistinguhable from his peers he will be accepted. I want a Stepford child.” The kid has to act normal whether he is or he isn’t.

3. Parents intervene because we have to do something.

A lot of parents seem to be long term users of biomedical interventions who persist despite the lack of success. They remind me of the parents in the Autism Speaks video who were following the same interventions. At the time I wrote this.

Some of those in the video referred to doctors’ appointments, therapies and interventions costing tens of thousands of dollars a year. But the parents seemed not to expect them to work. They talk of a lifetime of battling with autism and expect their children to still be autistic when they, the parents are dead.

Autism is characterized as a barrier to be overcome. But they do not hold out much hope for their own children. They are trying every therapy under the sun but the big picture is about research that will lead to prevention and cure.

For me the video is not about autism as such. It is about a particular psychological response to autism. There is an ideology around autism that helps to shape that response. In opposing the video I am not denying the experiences of parents. I shared many of those experiences when my son was growing up. I am not denying the lack of services or support. I am not denying the lack of understanding outside the autism community. I am not denying that autism itself can be the source of immense difficulties.

I am concerned to deny the ideology that demonizes autism and distorts the facts in order to justify itself.

These parents persist in fighting their demonized version of autism because they have to. To do otherwise would be to give up on their children – the ultimate betrayal. If only they could give up on their demons instead and accept their children for who they are. That is when the real fight begins, when you fight with your child against a system that denies their right to acceptance, understanding and support.

In any debate there are bound to be different interpretations of the facts. If the debate gets really heated the facts themselves may be called into question. But when it come to MMR and autism it seems that one side of the debate is able to ignore facts that are a matter of public record and ought to be beyond dispute.

Much was made of Tony Blair’s refusal to publicly state whether or not his children had had the MMR vaccination. MMR activists used this to imply that the Blair children had been given separate jabs and to berate the goverment for hypocrisy. But in February last year, Gordon Brown, who has now succeeded Blair as Prime Minister, publicly stated that his son had been given the MMR jab. The Daily Telegraph reported that

Gordon Brown yesterday made it clear that his two-year-old son John had been given the MMR jab after the publication of a report showing that, in some parts of the country, as few as one in nine children were being given the triple vaccination.

The Chancellor said parents had obligations to the rest of society to protect children from disease.

So imagine my surprise when I looked at a recent story in the Mail that reported that Ed Balls, the Secretary of State for Children, Schools and Families and a close ally of Prime Minister Brown had also given his children the MMR vaccine. The surprise came later when the Mail reported that,

Campaigners are now calling on the Prime Minister to declare publicly that his children, too, have had the MMR inoculation.

Now, I can accept that a few MMR believers may have missed the news that Gordon Brown had given his son the MMR. But the way the Mail reported their views suggests that it missed this nugget as well. The Mail has been a consistent defender of AndrewWakefield over the years and done much to keep the MMR scare in the public mind. How could they have missed this? And the MMR campaigners who are usually so assiduous in collecting every snippet of news related to vaccines – how could they forget this? Anyone who googled “Gordon Brown MMR” would be taken straight to the story.

The comments section of this story and an earlier story that reported on the recent measles outbreak are replete with demands for Brown to come clean on MMR and his child. He already has, 18 months ago. But the belief in a government conspiracy/cover up over MMR is so strong amonsgt the true believers that they automatically believe the worst even when it is demonstrably false. It makes sense to them that Brown would prevaricate over his son’s vaccination record if he was part of the cover up. In other words if, according to my prejudices it ought to be true, then it has to be true.

At the beginning of this article I referred to the MMR debate. But there can be no debate if one side not only refuses to listen to its opponents but is also deaf to relevant facts from independent sources that do not support its point of view.

Dr Mike Fitzpatrick has two commentaries on the recent upsurge in measles; one in The Times and one in The Guardian. Both have provoked similar dispiriting responses from within the ranks of the MMR faithful. But there has also been a spirited defence of evidence based medicine and scientific principles. Please go there and add your comments. Reason needs to make its voice heard.

The recent story in the Observer that headlined the one in 58 figure for autism prevalence is no longer available on the Guardian Unlimited website. When I enquired about it I received this reply.

As there is a legal issue with the article that appeared on page 1 of the Observer on 8 July, the article has been removed from the website and digital edition. Therefore, I regret that we are unable to provide you with this article.

Please accept our apologies for the inconvenience this causes, however in such circumstances we stop providing articles as soon as a legal complaint is received.

But the internet does not work like that. The article and the probable reasons for the legal complaint have been widely blogged and numerous references to it remain online. Unfortunately, many of these internet references are uncritical endorsements of the the original assertions in the Observer that autism rates had doubled and that two members of the research team, “leading experts in their field,” believed that the MMR vaccine was partly responsible for this increase.

The Observer supported these assertions with quotes from members of the research team at Cambridge University. Unfortunately for the Observer, both the assertions and the quotes were fabricated. Hence the swift removal of the offending article from their website, once legal proceedings were invoked.

This does not matter to true believers in the vaccine induced epidemic. They will repeat the 1 in 58 figure as an article of faith. But they are preaching to the choir. What about all the journalists out there who are read by the general public? The Observer story was taken up by newspapers throughout the world. Are they going to take down their stories or issue corrections? When the issue is finally settled will the Observer run a front page story with banner headlines correcting the misinformation in their original story? Probably not. But even if they do, 1 in 58 is out there now like a virus infecting all subsequent discussions about autism prevalence.

The Observer’s recent scare story on autism has at least two good points.

They have taken such a beating that it is unlikely that they will publish another PR story for Wakefield for a long time to come.

I have discovered a lot of interesting blogs which support rational discourse and look forward to reading them on a regular basis.

Then there are the bad points. Most of the press ran with the story without questioning its veracity. Very few have picked up on the faults in the Observer story. This is the best I could find when doing a google news search on the terms Observer and Autism.

Press Round Up on the Observer, Wakefield, MMR and Autism

The Observer’s 8 July front page, featuring the claim of a one-in-58 risk of autism from the MMR jab, has prompted its sister paper, ‘The Guardian’, to run a meticulous debunking of the story in its Bad Science column. Its author, Goldacre, suggests the media that peddle such untruths should be “in the dock, alongside [Dr Andrew] Wakefield”. Despite the kicking, morale remains high at ‘The Observer’. Many of its own journalists thought the story deserved a good trashing.

Whatever you think about Andrew Wakefield, the real villains of the MMR scandal are the media. Just one week before his GMC hearing, yet another factless “MMR causes autism” news story appeared: and even though it ran on the front page of our very own Observer, I am dismantling it on this page. We’re all grown-ups around here.

[…]

Nothing has changed, and this scare will never be allowed to die. If we had the right regulatory structures, almost every section of the media would be in the dock, alongside Wakefield.

New fears over big surge in autism’; ‘I told the truth all along, says doctor at the heart of autism row’. Headlines in last week’s Observer (8 July) provide a media boost for Dr Andrew Wakefield as he faces charges of professional misconduct at the UK General Medical Council (GMC) over the conduct of the research that first suggested a link between the MMR vaccine and autism in 1998. [read on]

What the Blogs say about the Observer and Autism

These are the most recent blogs (last seven days) courtesy of Google that add something new to the debate. Lots of others either linked to or repeated Ben Goldacre’s excellent rebuttals in his badscience blog or to Mike Fitzpatrick’s equally trenchant piece in Spiked Online.

A couple of weeks ago The Observer (UK ‘quality’ Sunday paper) printed an article claiming an as yet unpublished study shows a dramatic rise in the prevalence of autism. They also managed to crowbar in the MMR vaccine as well just to raise the general levels of hysteria. [ read on ]

It’s one thing to get a story wrong. Everyone does that – I’ve certainly done a couple of howlers in my time. It’s quite another to, on being informed of your howler, try and cover it up. And, it appears, this is exactly what The Observer is doing after it’s truly appaling MMR/autism front story from last weekend. [ read on ]

This article and its subsequent coverage in the other press has set back public understanding of this subject by several years and unreasonably made the public question science even more, ironically when it is proper science that is the only way to truth in this, rather than the mumbo-jumbo “science” practised by Wakefield. [ read on ]

The main issue is that the Observer misinterpreted the results of this unpublished research. The paper claimed the research showed an increase in the prevalence of autism. Based on this misinterpretation it then blamed the supposed increase on the MMR vaccination, saying that two of the seven authors of the report privately thought the MMR jab might be partly to blame for the alleged rise in autism. [read on ]

Last week I blogged about the, now infamous, MMR piece by Dennis Campbell in the Observer. Campbell’s piece contained this.

“the MMR jab which babies receive at 12 to 15 months, might be partly to blame. Dr. Fiona Scott and Dr. Carol Stott both say it could be a factor in small numbers of children.”

Dr Scott subsequently e-mailed Ben Goldacre. The e-mail contained the serious allegation that some of the stuff in the Observer piece had been “fabricated”. [read on]

In the aftermath of the Observer debacle, one of those described in the original piece as being an MMR believer responded in the comment thread of The Guardian readers editor page. Her words are very telling and show, once more, what a shoddy and deliberately misleading piece of work this was. [ read on ]

Speaking of Bad Science and bad reporting and how the two seem to go together so frequently, Ben Goldacre goes after The Observer big time in yesterday’s Bad Science column. The Observer, of course, continued to do its bit on behalf of scientific illiteracy with scare story on 9 July over yet another purported link between the MMR vaccine and the apparent rise in autism in the UK [read on ]

Most significant of all is Fiona Fox’s contribution. Fiona Fox is director of the Science Media Centre and according to her blog, after sending a note to Denis Campbell warning him that she could not defend his piece to angry scientists.

The Science Media Centre is first and foremost a press office for science when science hits the headlines. We provide journalists with what they need in the form and time-frame they need it when science is in the news – whether this be accurate information, a scientist to interview or a feature article.

If you read Fiona Fox’s blog she makes quite plain the help and advice that the SMC offered to the Observer in the aftermath of their diasterous front page story. Judging by their continued weaseling in today’s edition, The Observer is still clinging to the wreckage of its original story despite the advice of the SMC.

As an added irony, when I looked up who funds the SMC I found the Associated Press (Daily Mail, Mail on Sunday, Evening Standard) DailyExpress, Trinity Mirror (Daily Mirror, Sunday Mirror, Daily Record, the People etc.) and News International (Times, Sunday Times, Sun) all represented. In fact, apart from the Telegraph and the Independent, nearly every national newspaper in the UK supports the SMC except the owners of the Guardian and the Observer.

There has been a lot of discussion recently about how bloggers cannot meet the standards of professional journalists. Judging from this incident I am not sure that I aspire to the standards of journalists like Denis Campbell. I will end with a modest proposal from Brian Deer in the comments section of Kev’s blog.

My suggestion is that people should write to the Observer and suggest that, since there is still so much confusion about the duty of reporters, and what – on this matter of grave public interest, affecting the safety of children – are a newspaper’s reasonable duties to accuracy, the Observer should join with the complaining readers and refer the matter – jointly and with agreement – to the Press Complaints Commission for adjudication.

See what they say to that!

My letter is in the post. I even put a stamp on the envelope. If I get a response I will let you know next week.

The report from the ARC was entitled the Final Report of a three-year research project for the Shirley Foundation, a private charitable trust that has an interest in the issue of autism. The foundation paid almost £300,000 for the study which Dr Scott, one of the authors, described in an internal email as ‘very thorough’. As such The Observer believed it legitimate to report its findings, given the apparent status of the work. Professor Simon Baron-Cohen, the director of the ARC, has subsequently said that the data in the report is still being analysed and is therefore incomplete.

Final Report in this context means final report to the funding body. It cannot be equated with the final report of the research team to their peers. This was an academic work in progress. When they eventually spoke to Professor Baron-Cohen the Observer learned that the data in the report is still being analysed and is therefore incomplete. Therefore it is not a legitimate source for their story.

The Observer claims they were unable to contact Dr Scott prior to publication. Post publication, the Times and the Telegraph had no problem contacting Dr Scott.

Meanwhile Dr Scott had to contact the Observer via their online comments form in order to respond to their misrepresentation of her views. But they are able t0 quote “internal” (i.e. private) emails from Dr Scott.

So we have a prestigious national newspaper that has access to a private document (the interim report of the research team to its funding agency) and access to the private emails of one of the researchers. But said newspaper is unable to obtain public access to either the lead researcher (Professor Simon Baron-Cohen) or Dr Scott prior to publication.

Here is a thought. Why didn’t the Observer delay publication until after they had spoken to Professor Baron-Cohen and Dr. Scott? This was not breaking news. They could have waited. Surely, this report’s timing was not influenced by the same reporter’s “exclusive” interview with Andrew Wakefield in the same issue, prior to his disciplinary hearing before the GMC?

Here is another thought. Someone offers the Observer a story on a plate: leaked report; leaked emails; background briefing. Oh, and while you are at it, how about an exclusive interview with the main man?

Should they check it out or accept it uncritically? What do you think happened?

The 1 in 58 figure was described by one of the authors as ‘our primary analysis’ and was the only figure presented in the Final Report’s summary. It was therefore highlighted by The Observer. In the body of the ARC’s report the figures 1 in 74 and 1 in 94 were also published.

Do tell. Which one of the authors described 1 in 58 as our primary analysis? Dr Stott, anybody?

The Observer should have reported these figures in the news story so that readers were aware that there were different interpretations of the findings. That they were left out was due to a reporting and editing error.

A very misleading error in my opinion. And just to be clear, reporting errors are made by reporters. Editing errors are made by editors. People screwed up here. The people should admit their error and apologize.

There’s more.

Dr Stott, one of the authors of the Final Report and described by The Observer as believing that there maybe a link in a small number of cases between MMR and autism, does some work for Thoughtful House, the autism centre in Texas that treats children from all over the world. Dr Wakefield works at Thoughtful House. Dr Stott’s links to Dr Wakefield should have been made clear in The Observer news report.

So Stott and Wakefield are both employees of Thoughtful House? They bump into each other in the canteen now and again? Not exactly. Wakefield is Executive Director of Thoughtful House. Stott is a senior researcher there. She and Wakefield have issued joint press releases answering critics of Thoughtful House. Does that make it clear?

It gives me no pleasure to see a newspaper like the Observer squirm like this. Your sister paper, the Guardian, has already published a damning critique of the whole affair. Why continue to defend the indefensible when a simple, “Sorry, we were wrong.” would have sufficed?